Thyroid level

Hi I am so mad over a year ago they put my thyroxine down to 75 mcg when I was doing ok on 100mcg they said I was over loading on it but I said felt fine then in March this year was diagnosed with fibromyalgia. So I was going for my b12 injection and to get Thyroid checked as well as you do. So when I called for results was told you have to go back up to 100mg of thyroxine and Dr wants to speak to you about full blood count folate level ferritin level and vit d has anybody else experienced this or similar ??? Thanks for listening

12 Replies

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  • I'm sorry you've had your original dose reduced. That's the problem with doctors - they don't appear to know anything about treating hypothyroidism, except only go by the TSH and tell the patient that any other problems are nothing to do with the thyroid gland (they are unaware of symptoms and wouldn't know a clinical symptom if it jumped out on them). Patients will then get another prescription to 'treat' the symptom rather than a decent dose of thyroid hormones.

    Zita71 - what you have to do is to get a print-out from the surgery of your results, with the ranges. Post them on a new question for comments.

    When you go for blood test for your thyroid hormones, allow 24 hours between dose of levo and the blood test which should be as early as possible. Fast (you an drink water) too. Take levo after test.

    This is some advice and we have to read and learn if we want to recover our health. First two questions in particular and there are other topics at the top of the page. This site is now archived so some links within them may not work but there's loads of info.

    web.archive.org/web/2010103...

  • Thank you x x

  • Zita, it unfortunately happens all the time when doctor's adjust dose according to the TSH. Thyroid levels should be retested 6-8 weeks after any dose adjustment to avoid long term over or under medication. If 100mcg is too high, and 75mcg too low, 75/100mcg alternate days may be adequate.

    Shaws advice above to have early fasting thyroid tests when TSH is highest, and to take Levothyroxine after your blood draw is good.

  • Thanks great advice from both of you x x

  • Zita, this is extremely common because doctors only go by the TSH reading. The majority of them know absolutely nothing about how the Thyroid works or otherwise. If you feel well on 100 mcg then that is the dose you need. If they try to lower your dos again tell them you feel fine on the dose you are taking and insist you stay on it. If you have had all the full bloods done ask your doctor for a copy of all your results with the ranges. You are entitled to them, then post them on here and some of our very clever members will tell you what they all mean.

    If you have not yet had all the extra tests ask your doctor if you can have Free T4 and Free T3 done as well. These give a better picture of where you are at. It is possible the lab will refuse the FT3 but it doesn't hurt to try.

    You might also find that when you are optimally medicated your Fibro will be vastly improved.

    Goo luck, Barb

  • Thank barb x x

  • I have Fibromyalgia , anaemia and have been on Levothyroxine for years. Recently my GP dropped my dose down to 50mcg, which is the lowest I have ever been on. I feel very lethargic and asked if I could go back to at least 75mcg, but was refused. My GP insists that I am on my correct dose ( going on blood test results) and if you over medicate, it can cause heart problems. I just feel like giving up !

  • Over a month ago you had some excellent advice on the thread. It was suggested you obtained copies of your blood test results so we could help you and have possible advice to prevent your GP reducing your Levo. Did you have them ? Sorry perhaps I have missed a post somewhere.

    Fibromylagia is often linked to low VitD and Low T3 - have these been checked ?

    healthunlocked.com/thyroidu...

  • I asked my GP for a print out, which hasn't been forthcoming yet. I am having another blood test next week, so hoping I get a print out then. I also asked if I could have a range of tests done, but she said she was only allowed to request TSH and the lab would refuse to do other tests. I have just started myself on Vitamin B complex and once I am happy on that, I shall start on Vit D. I belong to Thyroid UK now and find their magazine helpful. My sister is an unstable diabetic and gets much more advice and I feel thyroid patients are not well medicated or understood. Thank you for your reply.

  • nhs.uk/chq/pages/1309.aspx?...

    As you can see it is your legal entitlement to have copies of your test results and you do not have to give a reason. It is quite empowering to monitor your own progress.

    Perhaps you could access the information on Thyroid UK about the Private Testing if your GP continues to be unhelpful. You really do deserve to know more than just the TSH. That is as you know a VERY small part of the whole thyroid story.

    thyroiduk.org.uk/tuk/testin...

    I had once been diagnosed with Fibro - over 15 years ago. I was diagnosed with Hashimotos in 2005 and soon after reaching optimal treatment for the thyroid I no longer suffered. I am now T3 only. You can read my journey by clicking onto my name and reading my edited Profile :-)

  • My endo tried reducing my meds by half a grain just by writing a prescription, so I stormed his diabetes clinic (after waiting for his patient to leave) and demanded that any change in meds should be discussed and agreed with me, the patient, not arbitralily changed according to the whims of the endo! It worked he was so scared he wrote out a prescription for the former level!

  • Apologies for hi-jacking your thread. Hope you soon feel better and that you can find stability with your dose. Glad you have had lots of helpful replies :-)

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